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Brinsupri (aka Brensocatib)

Posted by scoop @scoop, Aug 12 10:55am

FDA approved Brensocatib today. Hooray for us. Let’s hope we have access to it as soon as possible and it gives us some measure of relief. Thank you to all the scientists and doctors and patients!
https://www.multivu.com/insmed/9347351-en-fda-approves-brinsupri-brensocatib

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egayle187 | @egayle187 | Oct 5 7:39am
In reply to @blm1007blm1007 "@egayle187 Irene - Did you with your insurance plan and pulmonologist have any trouble getting approval..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@egayle187 Irene -
Did you with your insurance plan and pulmonologist have any trouble getting approval for the Brinsupri for you?
Was it prescribed by a local pulmonologist at a Center of Excellence?
Barbara

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@blm1007blm1007
No trouble. My local pulmonologist is at Southern Tier Pulmonology in Vestal, NY.

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crepass | @crepass | Oct 5 10:36am
In reply to @cwal "@crepass I don't know if you spoke to your pharmacist yet, but I think your thought..." + (show)
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@crepass
I don't know if you spoke to your pharmacist yet, but I think your thought about her misspeaking on a small area in the trials is correct. I have not read this nor did I hear anyone mention it in the two videos (one of which was Dr. Daley) I listened to.

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@cwal . I asked my pulmonologist and she said no labs necessary. sorry about that misinformation.

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crepass | @crepass | Oct 5 10:44am
In reply to @blm1007blm1007 "Plans and approval for Brinsupri. How is it working for those in these different circumstances and..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

Plans and approval for Brinsupri.
How is it working for those in these different circumstances and health plans with the D plan for the Brinsupri.
Just wondering if local pulmonologists prescriptions are having difficulty for their patients getting approval compared to such facilities as NYU Langone or NJH etc.
How it is working for those agreeing to starting Brinsupri.....in getting approval for Brinsupri under the following circumstances/plan arrangements.
Advantage Plans with D Plan built in
vs.
Medicare with Supplemental Plans that include, within them, D Plan built in.
vs
Medicare, Supplemental Plan and Separate D Plan.
Barbara

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@blm1007blm1007 I have an advantage plan with D built in and had no problem getting approved (humana). My pulmonologist is at lsumc in new orleans.

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crepass | @crepass | Oct 5 11:06am
In reply to @crepass "actually, I’m going to ask my md about it next week. the pharmacist with brinsupri mentioned..." + (show)
Profile picture for crepass @crepass

actually, I’m going to ask my md about it next week. the pharmacist with brinsupri mentioned it, but she was very in depth and maybe misspoke about a small area in the trials. I’ll try to review.

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@crepass no need for lfts. talked with pulmonary. no labs necessary.

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kpger | @kpger | Oct 5 1:59pm

I took the first dose of Brinsupri yesterday. The approval process for the drug was easy and straightforward through my doctor's office. A few missteps on the financial side but it all worked out. I was originally told by the pharmacy (Amber Specialty Pharmacy) my co-pay would be $1695.00 but after calling my educator at Enlighten I was told to go online to apply for a grant through The Assistance Fund. The approval came through very quickly. I called the pharmacy back and gave the the information from the approval form. He called back in a couple of hours, confirmed the approval and told me that TAF covers the entire amount of the co-pay not covered by Medicare. I was in shock, AND grateful!

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crepass | @crepass | Oct 5 4:32pm

The big thing is that I can deep breathe without coughing. I’m able to play ping pong at a senior center without running out to cough up a lot of sputum or constantly have a cough drop at my beck and call. I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). Definitely less fatigue, can play with grandkids. ( even tho they are much more careful this year to stay away if they are sick). I ‘m pretty sure the decreased mucus is a “real” thing. Still have to do airway clearance and 7% nacl nebs 2x daily . but get up much less sputum and very light compared to the last year. still keeping my fingers crossed as it’s only been 37 days.
( i wrote this on another thread , in response to to a question… how are you feeling better?)

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spectrumcyclist | @spectrumcyclist | Oct 5 7:50pm
In reply to @blm1007blm1007 "Plans and approval for Brinsupri. How is it working for those in these different circumstances and..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

Plans and approval for Brinsupri.
How is it working for those in these different circumstances and health plans with the D plan for the Brinsupri.
Just wondering if local pulmonologists prescriptions are having difficulty for their patients getting approval compared to such facilities as NYU Langone or NJH etc.
How it is working for those agreeing to starting Brinsupri.....in getting approval for Brinsupri under the following circumstances/plan arrangements.
Advantage Plans with D Plan built in
vs.
Medicare with Supplemental Plans that include, within them, D Plan built in.
vs
Medicare, Supplemental Plan and Separate D Plan.
Barbara

Jump to this post

@blm1007blm1007 I saw my pulmonary NP on Monday and got Part D approval on Friday. Hope to have it in my hands and lungs by the end of the week. My doc’s office handled this quite well, as they always do with specialty meds .

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blm1007blm1007 | @blm1007blm1007 | Oct 5 9:30pm
In reply to @crepass "The big thing is that I can deep breathe without coughing. I’m able to play ping..." + (show)
Profile picture for crepass @crepass

The big thing is that I can deep breathe without coughing. I’m able to play ping pong at a senior center without running out to cough up a lot of sputum or constantly have a cough drop at my beck and call. I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). Definitely less fatigue, can play with grandkids. ( even tho they are much more careful this year to stay away if they are sick). I ‘m pretty sure the decreased mucus is a “real” thing. Still have to do airway clearance and 7% nacl nebs 2x daily . but get up much less sputum and very light compared to the last year. still keeping my fingers crossed as it’s only been 37 days.
( i wrote this on another thread , in response to to a question… how are you feeling better?)

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@crepass That is so encouraging for me to hear what you said above, "I’m able to play ping pong at a senior center without running out to cough up a lot of sputum ".......... I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). "
Crepass....You just described my problem that is so frustrating and is keeping me from eating with others or being out in public fully in a social way.
What a game changer for you......and hope it will be for me.
I am going to see the pulmonologist(s) the end of this month and although I have never been on any medications for a chronic health problem in the past and have turned down the antibiotics for BE, although I have a low load of MAI, due to my feeling well and not having had an exacerbation. I'm am very close to mentally being ready to try the Brinsupri.
Thanks for sharing your experience with it so far.
Barbara

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cwal | @cwal | Oct 6 7:30am
In reply to @crepass "The big thing is that I can deep breathe without coughing. I’m able to play ping..." + (show)
Profile picture for crepass @crepass

The big thing is that I can deep breathe without coughing. I’m able to play ping pong at a senior center without running out to cough up a lot of sputum or constantly have a cough drop at my beck and call. I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). Definitely less fatigue, can play with grandkids. ( even tho they are much more careful this year to stay away if they are sick). I ‘m pretty sure the decreased mucus is a “real” thing. Still have to do airway clearance and 7% nacl nebs 2x daily . but get up much less sputum and very light compared to the last year. still keeping my fingers crossed as it’s only been 37 days.
( i wrote this on another thread , in response to to a question… how are you feeling better?)

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@crepass
I am soo happy for you!! Keep going! 🙂

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helen1000 | @helen1000 | Oct 6 7:45am
In reply to @sueinmn "Below you can find my take on the runningonair/NTMir Webinar on Brinsupri. This talk did not..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Below you can find my take on the runningonair/NTMir Webinar on Brinsupri.

This talk did not cover side effects and similar information. I will keep an eye out for that info and post it here as found.

What is my takeaway? This is an exciting development, but not a cure, nor even a full treatment for Bronchiectasis.

According to Dr O'Donnell, you still need to do everything you do today - just add this drug and hopefully reduce your exacerbations. The one year results show a 20-25% reduction in exacerbations. If you have 2 per now, you may be down to 3 every 2 years. We don't know yet if results improve over time.

The cost is high, and it is not yet clear how Medicare, Medicaid and private insurance companies will handle cost sharing.

What will I do? Watch and wait - I think in my risk/benefit world, it is too far from a sure thing yet.

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Thanks a lot Sue! It is so helpful! Also with AI developed, I always feel antibiotics invention can have a breakthrough which is to say, maybe we can find a med that cures MAC in the near future!

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